In my first post I explained that I had been diagnosed with PMR in September last year, following a hip replacement operation (about 9 weeks afterwards) consultant gave me 15mg of pred for 1 week then 10 mg for 4 weeks to be reduced by 1mg per month which I followed and was doing well with no symptoms. Following second hip operation 12 weeks ago I am now struggling with symptoms which I am not 100% sure are PMR or arthritis, (its happened around 9 weeks after the op again) neck discomfort (like a whiplash) very stiff ankles and pain in hands and 1 finger on each hand and both thumbs. Last week after replies from my first post I upped pred from 3mg to 8 mg and for a couple of days seemed to be reducing symptoms but today got up and I am in more pain and discomfort than ever. Could hardly move hands and fingers, really painful. very stiff ankles, can hardly walk but the neck is ok. I am going back to work on Thursday after 12 weeks off with my hip and I ma not sure I can cope like this. The symptoms I have now are not anything like the original PMR symptoms,, Cant get a appointment to see the Consultant until 22nd May, GP just said to tell the consultant my symptoms and gave no other advice? I am so miserable I dont want to live like this in constant pain and discomfort.. I have tried tramadol. Codeine, Naproxen etc. and nothing seems to make any difference ? HELP!

15 Replies

  • Hi Lynne20754,

    Sorry to hear how awful you are feeling. For starters I would suggest you ask the GP to check your ESR and CRP by means of a blood test. If these come back elevated, at least you have something tangible to demonstrate a problem. Then, I would suggest you push for an appointment with a Rheumatologist. Personally, I think you have been reduced too rapidly on your Prednisolone, but I know they like to reduce quickly if possible.

    Take regular Paracetamol in the meantime, but don't be afraid to be assertive with your GP, Good luck.

    Tomasina x.

  • Thank you Tomasina for your reply, can I ask what ESR and CRP stand for? I tried to find a number for the rheumatology dept this morning and can only find a switchboard number for the hospital. Its not a local hospital but in the next county as my nearest had a massive waiting list and Rotherham only had 2 week waiting list. I have taken paracetamol and codeine but the codeine makes me tired.. The bank holiday weekend doesnt help either :( Until my operation 12 weeks ago I was doing well with no symptoms and I think that the op has "set it off" again. :( thanks again appreciate the input xx

  • ESR= Erythrocyte Sedimentation Rate which is a simple test used to determine how much inflammation is in the body, but it cannot diagnose the specific condition causing the inflammation or say where the inflammation is in the body.

    CRP = C-reactive protein which is produced by the liver. The level of CRP rises when there is inflammation throughout the body.

    The two tests are often done together

    Hope that helps

  • Thanks :)

  • Dear Lynn29754.. I am so sorry you are going through this awful time .Its awful that you can't get any answers. Has your Consultant got a nurse that you can telephone to ask for advice? I know how you feel I've just had 6 weeks and more of going through the most awful pain and virus and now I have an absyss on a tooth and have to wait until next Tuesday pm to get it looked at unless I have to go to Emergency Dentist . Its horrible to feel so miserable , I have shed so many tears in the last few weeks and haven't wanted to live with this horrible condition and the pain that it brings and I have had to go back up on the steroid .I to have been taking the painkillers but they make you feel awful as well. I hope you feel better soon and get some advice. This Forum is amazing and lots of lovely fellow sufferers got me through by just letting me know that they are there for me . I hope your pain settles soon and you can get some sound advice..Let's hope you can enjoy Easter and this lovely Weather.trish29

  • I havent been told if he has a nurse and I have no telephone number for anyone. I seem to have good days and bad days alternately, today is a good day with not much pain, which is good as I am going back to work today for the first time in 12 weeks. I went to bed last night having taken 60mg codeine and slept well, didnt want to get up this morning though :( I am finding this forum a great support and I am so glad I found it :) Thank you all xx

  • Hello Friend,

    Your words of frustration and misery remind me of my own at the start of my PMR journey.

    The following words are my non-medical opinion, I hope they help you a little

    Your hip surgeries were a dramatic insult to your physical body.

    Your body's protective system has called all your defenses to alert! And they are warring against the trauma imposed on your physical body!

    What this example is demonstrating is that your immune system has reacted violently in response to the surgical traumas.

    Your auto-immune system is a beautifully engineered protector.

    All your life, it has protected you through disease, injury, and illness.

    By letting small armies of defenders loose at the appropriate times, and in the appropriate numbers, your auto-immune system has saved your life every time you were injured enough to wear a Band-aid. Remember having childhood measles, mumps, or whatever? Remember the giant insult of TWO hip replacements!

    Auto-immune to the rescue!

    Now, however, Auto-immune is overwhelmed and a bit confused and is attacking where it ought not!

    Enter Prednisone!!

    Prednisone, in 10-15 mg doses, will calm Auto-immune, and let it rest for a while.

    Read the wonderful posts of the experts on this forum, and take them to your doctors.

    It is my, non-medical, opinion that PMR is a disorder that you and I must study, in order to participate in our own treatment, and recovery.

    I also believe that PMR does not have any manners, and will cause serious pain in all kinds of locations not (yet) formally identified as PMR indicators. Example, my pain was low back/hips buttocks, forearms and ankles. Then, also being transitory, it moved around to knees, shoulders, etc.

    I believe my PMR was triggered by severe (first time) asthma, and respiratory infection, last summer.

    I have used acetaminophen, aspirin, mild narcotics, topical rubs, ice, hot baths, and anything else I could find to help.

    You will get better,

    but first,

    just stop and rest a little,

    and let prednisone help you.

    Sorry to run on so, I wish you well. Purplecrow

  • Purplecrow, I thank you!! Your post did not "run on" but is put most beautifully in a way everyone can understand. I know your words are right and I will step back, rest a while and hopefully let my immune system gather its troops together again, once again one day protect me.

    I need to find something that will help me get through the bad spots and some willpower to curb the cravings and hunger pangs that I have never experienced before as I had no appetite, now I am hungry all the time and although I can ignore it most of the time there are times when I cannot and therefore I have put 2 stones in weight on which does no good for the new hips :(

    I have never had a "sweet tooth" until I took Pred, now I can manage that by just one toffee sucked when I crave.. that settles that for a while :) being hungry all the time is the biggest hurdle. How do others cope with this?

  • Hi Lynn, thanks for the kind words

    I have enjoyed fresh pineapple for sweet. Also 3 chocolate kisses with a cup of mint tea. :-)

    I also try to drink extra water to help my body.

    I have gained 15 lbs, but leveled off now.

    Also I try to go lightly with carbs, and eat more red meat than in the past. (Thanks to a suggestion from another forum writer.)

    It is reasonable that you

    may be a bit anemic from your surgeries, and more iron from natural sources could help.

  • Some of the weight gain is fluid retention due to the pred. You will possibly find that the hunger pangs can be modified a bit by reducing the amount of carbohydrate you eat - especially bread, cake, pasta and rice. Don't eat too much fruit but fill up on non-root veggies and loads of salad leaves. Drink water rather than any sweetened drinks, whether sweetened with sugar (especially fructose syrup) or artificial sweeteners.

  • I am on water tablets because of the swelling due to the hip replacement, been taking them for 2 weeks now and not noticed that much difference :( I tend to drink dilute juice as I dont like water, if i have water (which I take to work) I drink flavoured sparkling water.

    It will be better when I can move about a bit more and walk which I have been restricted with my hip :) Thank you for all the suggestions, I am taking it on board.. little by little :) x

  • Careful with the flavoured sparkling waters - they have a load of sugar in them! Look at the label!

    I have been away so didn't have much time to do my emails - but you mention this doesn't feel like the original PMR. Having PMR doesn't exclude you from having other things you know! About 1 in 6 patients who are originally diagnosed as having PMR are later told they have something else, often another form of arthritis and late onset rheumatoid arthritis is a particularly common mistaken diagnosis. If your symptoms improve a lot with 15mg pred it is most likely PMR but if there isn't a dramatic response the PMR diagnosis needs to be questioned. Your original reduction was far too fast for PMR - you need 6 weeks at 15mg before reducing at all to really deal with the inflammation and then you should reduce slower than you did.

    However, there is also a form of inflammatory arthritis which comes in response to an infection and it is also thought it can develop in response to trauma. A hip replacement is trauma - I wonder if that could trigger it. It occurs to me because you said it has happened at a similar time post-op both times and also in the original case the "PMR" didn't flare at such a speedy reduction. I think you need to discuss this with your orthopaedic specialist - I would try calling his secretary at the hospital and explaining the situation. Or your GP could do it if they are of the helpful sort.

  • Thank you PMRPro, My |GP isnt particularly helpful and just said tell the Rheumatologist when you see him when explaining my other symptons. I have upped the pred to 10mg but to be honest it isnt making much difference, my ankles and hands are terriblly stiff in the mornings and although they get a bit better during the day the pain and discomfort doesnt totally go.. I have discomfort in my shoulders but it doesnt really go down to the muscles in the my arms which it did before.. I could hardly move my arms before this is why I am thinking its not the same.. My ankles are stiff but I also have a stabbing pain in my left foot downt he side which they thought was gout but it isnt in my toes or red or hot or swollen it is just a stabbing pain when I move my foot in a certain way ??

    Sorry to go on but I am so miserable with all the pain that I cant seem to get under control. I will try and ring the hospital on Tuesday after the bank holiday :)

  • Do painkillers work? What you are saying sounds more like joints than muscles doesn't it? Whereas for most people, PMR is more muscles- with a bit of joint pain thrown in for some people. I really do see where you are coming from - it is so dispiriting when you feel ill and your first port of call, the GP, doesn't seem to be interested and the specialists are well nigh unreachable. Whatever it is - it doesn't sound much like pred-responsive PMR. So you need a rethink.

    Constant pain is awful - if you weren't depressed before you certainly end up so after a while! Good luck on Tuesday - I really do believe public holidays should be banned altogether, especially in the NHS! If you are a nurse or a paramedic you have to work. Why can't the rest of them! Mind you - I can remember fielding phone calls from patients who had had their card from our department with an appointment on 23rd/24th December! They just couldn't believe we would be at work! I - on the other hand - always offer to take that sort of appointment, even for surgery! On another note, my decorator got the keys whilst we were away between Christmas and New Year - he was happy to get out of the house and away from 2 school age children going stir-crazy ;-)

  • Hi and thanks again for the support, it means a lot to know that there is someone there that understands.

    For example I got up at 6am this morning, shoulders hurt as did hands and ankles, showered and let the hot water run on shoulders but didnt make that much difference. Sat with heat pad on shoulders and hands (couldnt reach ankles because of the restrictions due to hip replacement) Took 10mg Pred, 5mg Ramipril (blood pressure) 1 omneprazole (stomach protector) 500mg naproxen 2 x 500mg paracetamol. went to work at 8am, got home at 12 midday and shoulders still hurt, ankles and hands still stiff, fell asleep on sofa and when I woke shoulders had eased somewhat and hands a little easier and ankles not as stiff.. In the evenings I tend to take 30mg codeine and 10mg amitriptylene as well as 500mg naproxen (to say I rattle as I walk is an understatement)

    With my hands and fingers it feels like they need to crack but wont.. it hurts to straighten the fingers after they have been bent a while and hurts to bend after they have been straight (if that makes any sense) thanks again xx

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